Illness Journey Research Articles

Facing Illness Together: Understanding the Role of the Couple in Palliative Care.

Serious illness is rarely experienced by patients in isolation. Many patients present to palliative care (PC) accompanied by their intimate partner. The intimate partnership is a critical axis around which many patients' experiences of serious illness revolve. However, there is a lack of literature and training on how PC clinicians can effectively support couples as a unit. Many existing PC communication strategies can be expanded to the dyadic unit, offering more holistic support for patients, partners, and the entity of their relationship. This paper integrates concepts from couples therapy, psychology, and PC communication to provide insights into the emotional, psychological, interpersonal, and practical challenges couples face during serious illness, as well as opportunities for growth and resilience. Key strategies for PC clinicians include helping couples navigate shifts in relational identity, share the "emotional housework," and transform conflict into connection. Concrete techniques are illustrated throughout this manuscript, employing clinical micro-vignettes to demonstrate their practical application in PC practice. Recognizing the couple as a unified entity empowers clinicians to foster open communication, helping couples maintain connection and evolve intimacy throughout the illness journey. By applying relational concepts and acknowledging the couple's shared experience, PC clinicians can enhance the quality of life for both patients and their partners. Conceptualizing the couple as a distinct entity within PC practice can deepen clinician-patient communication and improve therapeutic effectiveness.

Toward improving anal health care among GBMSM in Kenya: Lessons from a patient’s illness, treatment and recovery journey

ABSTRACT We aimed to illuminate the challenges of treating anal diseases among gay, bisexual and other men who have sex with men (GBMSM) in a homophobic climate amid resource constraints. Building on a long-term Kenyan-Canadian collaboration, an anal healthcare intervention study, known as the WEMAH Project, was initiated in January 2022. The initial collaborative work strengthened existing anal health services provided at a community-based clinic serving GBMSM in Nairobi. The illness and treatment journey for one patient is highlighted. Prior to attending the community clinical programme, reluctance to disclose symptoms to other healthcare workers, misdiagnoses and incorrect treatment, absence of physical exam conducted, lack of access to effective medications, and self-treatment attempts not only led to late disease detection but also exacerbated the illness itself, culminating in advanced disease progression accompanied by severe pain and suffering. However, once connected to the community clinic with the enhanced anal healthcare programme, the disease was effectively managed by the clinical team. Although specialised clinics have been established throughout Kenya to meet the STI-related needs of GBMSM, the constellation of factors highlighted in one patient’s journey, from illness to recovery, reveals important gaps in Kenya’s existing sexual health programme for GBMSM.

Facing Cancer as a Chronic Disease: Shared Decision-Making at Critical Points in a Long Illness Journey

This is the third installment of a three-part series on decision support tools and shared decision-making. The first two articles centered on the devel­opment of person-centered standards for decision support tools and creating a taxonomy for classifying them.1,2 In this article, we describe how patients with­in three diverse communities who are living with cancer understand and make shared decisions. We used interactive sessions and storytelling in a qualitative setting to assess what matters to patients and caregivers, what language they use to describe their decision-making processes, and how individuals perceive their interactions with their health care providers. We also included qualitative assessment of the regional factors that affect equitable access to health care in the communities included in the study. For the second year of this work, we will combine the quantitative data from the first two articles with more in-depth analysis of patient priorities and values to develop and test prototypes of deci­sion support tools for this target population.

'Life Minus Illness = Recovery': A Phenomenological Study About Experiences and Meanings of Recovery Among Individuals with Serious Mental Illness from Southern India.

Traditional medical models have given way to recovery-oriented approaches over the years in the management of individuals with serious mental illnesses. However, very little is known about such recovery-based models in the Indian context. This qualitative study used a phenomenological approach to explore the experiences and meanings of recovery among individuals with serious mental illness in southern India. Purposive sampling with maximum variation was used to recruit participants. In-depth interviews were conducted with ten participants, using a semi-structured interview guide. Thematic analysis resulted in three themes: "The illness journey," "Life minus illness = Recovery," and "It takes a village to recover,". Illness and recovery seemed to be two sides of the same coin with the context playing an influential role in the perceptions of recovery. The term "recovery" seemed to be a misnomer giving the impression that one is expected to return to an illness free state.

'It was never about me': A qualitative inquiry into the experiences of psychological support and perceived support needs of family caregivers of people with high-grade glioma.

Family caregivers of people with high-grade glioma often report high rates of psychological distress, which has been attributed to the unique aspects of the disease and onerous care demands. Clinical practice guidelines advocate for caregiver support from diagnosis through to end-of-life and bereavement. Yet, research has identified that caregivers' support needs are often overlooked. To explore caregivers' experiences of psychological support and perceptions of what constitutes optimal psychological support for caregivers in the context of high-grade glioma. Qualitative study involving semi-structured interviews with data analysed using reflexive thematic analysis. Eighteen current (n = 11) and bereaved (n = 7) family caregivers (73% female, aged 33-69 years) of adults with high-grade glioma participated. Interviews explored caregivers' perceptions of psychological support. Two major themes were generated. The first theme, 'It was never about me', reflected caregivers prioritise for people with high-grade glioma to be well supported despite experiencing their own unmet psychological support needs. The second theme, 'Continuous, coordinated and personalised support', highlighted the importance of timely and tailored interventions addressing caregivers' practical, educational and emotional support needs throughout the illness journey. Caregivers commonly prioritise the support needs of people with high-grade gliomas; yet, have their own distinct needs that vary throughout the illness. Primary care providers have a potential role in facilitating timely access to palliative care, practical support and brain tumour-specific psychological support to meet caregivers' diverse needs across the care continuum in the context of high-grade glioma.

QOL-38. PSYCHOSOCIAL OUTCOMES OF CHILDREN WITH DIFFUSE INTRINSIC PONTINE GLIOMA (DIPG) AND HIGH-GRADE GLIOMA (HGG) –PROSPECTIVE, LONGITUDINAL PROMIS ASSESSMENTS OF PATIENTS ENROLLED ON CONNECT PHASE I CLINICAL TRIALS

Abstract INTRODUCTION Given poor prognoses, children with DIPG/HGG may experience psychosocial sequelae throughout their illness journey, negatively impacting quality of life (QOL). We prospectively assessed caregiver-proxy and patient-reported psychosocial outcomes of children with DIPG/HGG enrolled on two early-phase CONNECT trials. METHODS Patient-Reported Outcomes Measurement Information System (PROMIS) short forms were administered monthly to patients ≥8 years and caregivers of patients aged 5-17 years while enrolled on two phase I clinical trials for newly-diagnosed DIPG/HGG involving upfront radiotherapy (RT) and concurrent and/or adjuvant oral agents. T-scores (M=50, SD=10) were calculated relative to the general population for emotional distress (Anxiety and Depression) and relationship quality (Peer Relationships and Family Relationships). Linear mixed modeling compared scores at pre-RT, post-RT, 1 month pre-progression, and end of therapy (EOT). Spearman’s correlations were calculated. RESULTS Twenty-eight patients (median age=10 years; DIPG [n=23]; HGG [n=17]) and 40 caregivers participated. Patient and caregiver-proxy reports demonstrated comparable levels of emotional distress and relationship quality to norms and were stable over time. The proportion of patients endorsing mild or greater impairment in emotional distress (T-score >55) was relatively comparable at pre-RT (Anxiety & Depression=26%), post-RT (Anxiety=36%, Depression=23%), and 1 month pre-progression (Anxiety=23%, Depression=36%), with more patients endorsing impairment (Anxiety=58%, Depression=67%) at EOT, often corresponding to disease progression; though differences were not statistically significant. Caregiver-proxy and patient-reported scores were similar across all timepoints and domains, with a pattern of higher caregiver-reported versus patient-reported emotional distress (Spearman’s Rho range: 0.62-0.67;p<0.0001). CONCLUSIONS Children with DIPG/HGG and their caregivers reported comparable emotional functioning and relationship quality to the general population. Caregivers slightly overestimated psychological distress compared to youth self-reports. Findings may reflect resilience of this population when faced with adversity, while highlighting benefit of psychosocial supports and low therapy toxicity on QOL. Future analyses will compare psychosocial, physical, and functional symptoms.

It's About the Journey - Capturing Stories of the Fluctuating Experiences of Youth Kidney Transplant Patients

Youth who undergo a kidney transplant can experience a fluctuation of successes and challenges throughout their chronic illness journey. Designing to capture their journey could help youth to reflect on their experiences, collaborate on their care, and be empowered to live their lives to the fullest. We interviewed 11 youth kidney transplant patients and 12 caregivers to elicit their transplant journey experiences. We found that probing participants about specific parts of their transplant journey gave them structure to tell us rich stories about their experiences. Based on our findings, we discuss informing the design of a tool to support the capturing of stories for youth with chronic illnesses. Designing such tool could help youth and their caregivers to identify barriers, support reflection, and promote self-efficacy. Youth with chronic illnesses already have to change so many aspects of their lives to accommodate their illness, however, by giving them a platform to capture their chronic illness journey, it could encourage them to take more control of their lives and better collaborate with others.

Attitude towards mental help-seeking, motivation, and economic resources in connection with positive, negative, and general psychopathological symptoms of schizophrenia: a pilot study of a psychoeducation program.

Schizophrenia is typically treated with medication as the first approach, but additional strategies are necessary to enhance the effectiveness of this treatment for better outcomes. However, it is crucial to explore methods, alongside medication, that promote a positive attitude towards seeking mental health support and alleviate symptom severity among non-institutionalized individuals of different age groups in Pakistan. Thus, this pilot study aimed to utilize a psychoeducation program to enhance patients' motivation and attitudes toward seeking treatment, decrease symptom severity, and investigate the role of financial factors in their illness journey. In this preliminary investigation, our focus was on individuals who had been diagnosed with schizophrenia and were receiving treatment from various hospitals and primary care clinics. Following a thorough screening process, 255 participants met the eligibility criteria, and 220 completed the psychoeducation program. The study included both male and female participants, with 143 (56.08%) being men and 112 (43.82%) being women. Regarding marital status, 123 (48.24%) were single, 98 (38.43%) were married, and 34 (13.33%) were divorced widowers or widows. The age range of the respondents varied from 18 to 52 years, with a mean age of 35.45 and a standard deviation of 10.27. The results indicated a decrease in symptom severity following a 16-week psychoeducation program. The psychoeducation program significantly reduced the positive symptoms, negative symptoms, and general psychopathological symptoms among patients. Similarly, significant improvement was observed in patients' motivation toward treatment and they actively participated in treatment after getting psychoeducation about the treatment. Similarly, after the psychoeducation program significant improvement was seen in patients' attitudes towards help-seeking and perceived mental health functioning. In summary, the findings suggest that our psychoeducation program has the potential to positively impact the motivation and help-seeking attitudes of schizophrenia patients towards treatment. Moreover, there is a need for further exploration of psychoeducation programs for schizophrenia, particularly in countries facing economic challenges. This study paves the way for the development of an indigenous psychoeducation program tailored to Pakistani schizophrenia patients, with potential applicability for Urdu-speaking individuals. https://www.thaiclinicaltrials.org/show/TCTR20210208003, identifier TCTR20210208003.

Young people's priorities for the self-management of distress after stoma surgery due to inflammatory bowel disease: A consensus study using online nominal group technique.

The aim of this study was to gain consensus among young people with a stoma due to inflammatory bowel disease (IBD) on the priorities for the content of an intervention for the self-management of stoma-related distress. The current identification and management of distress in young people with a stoma is often suboptimal in clinical settings and there is a need for improved support resources. Two consensus group meetings were carried out via online video conferencing, using nominal group technique. Participants generated, rated on a Likert scale and discussed, topics for inclusion in a future self-management intervention. Nineteen young people, aged 19-33, with a stoma due to IBD took part in one of two group meetings. Participants were located across England, Scotland, and Northern Ireland. Twenty-nine topics were generated by participants, seven of which reached consensus of ≥80%, that is, a mean of ≥5.6 on a 7-point Likert scale. These were: receiving advice from young people with lived experience of stoma surgery; advice on/addressing concerns about romantic relationships, sex and intimacy; information about fertility and pregnancy related to stoma surgery; stoma 'hacks', for example, useful everyday tips regarding clothing, making bag changes easier and so forth; reflecting on and recognising own emotional response to surgery; tips on managing the stoma during the night; and processing trauma related to the illness and surgery journey. Findings extend previous research on young people's experiences of stoma surgery, by generating consensus on young people's priorities for managing distress related to surgery and living with a stoma. These priorities include topics not previously reported in the literature, including the need for information about fertility and pregnancy. Findings will inform the development of a self-management resource for young people with an IBD stoma and have relevance for the clinical management of stoma-related distress in this population. Three patient contributors are co-authors on this paper, having contributed to the study design, interpretation of results and writing of the manuscript. The study's Patient and Public Involvement and Engagement advisory group also had an integral role in the study. They met with the research team for four 2-h virtual meetings, giving input on the aims and purpose of the study, recruitment methods, and interpretation of findings. The group also advised on the age range for participants. The views of young people with a stoma are the central component of the study reported in this paper, which aims to gain consensus among young people with an IBD stoma on their priorities for the content of a resource to self-manage distress related to stoma surgery.

How we approach sharing child-caregiver PRO disagreement.

Researchers use patient-reported outcomes (PRO) to capture the patient experience, and in pediatrics, parent report of symptom and function often accompanies the child's assessment. Children with cancer and their family caregivers frequently evaluate symptom burden and functional status differently. Child-caregiver PRO disagreement often worries pediatric oncology clinicians, who do not know how to best approach sharing it with families. Openly discussing differences in symptom and functional status reporting is a crucial element of supporting families and can improve family harmony throughout the child's illness journey. This paper offers strategies and language for communicating with families about PRO disagreement.

The transitional experiences of an international student facing chronic physical illness

This article illuminates the author’s transitional experiences during a chronic physical illness in China. Although many studies have considered patients’ chronic physical illnesses, few have considered international students’ experiences of chronic physical illness by means of the narrative approach. The author examines her chronic physical illness journey based on transitional experience and narrative identity theory. The narrative indicates a sense of identity, agency, and adaptation to change, and the exploration of such experiences could significantly contribute to the literature on students’ chronic physical health from a student’s perspective.

Being devastated by critical illness journey in the family: A grounded theory approach of post-intensive care syndrome-family

ObjectivesThis study aimed to explore the meaning and structure of postintensive care syndrome experienced by families of critically ill patients. MethodsThis qualitative study applied the constructivist grounded theory approach and conducted one or two interviews with eight participants with postintensive care syndrome-family for a total of 12 interviews. The contents of the interviews were analysed through line-by-line coding, focused coding, and categorisation. Data collection and analysis were iterative, to enable continuous comparative analysis. FindingsThe core category of postintensive care syndrome experienced by families was ‘being devastated by the critical illness journey in the family’ and comprised the interactions of four categories: ‘overwhelming intensive care experience’, ‘taking responsibility for the recovery trajectory of critical illness’, ‘life devastated by the trauma of intensive care and family caregiving’, and ‘balancing and compromising’. ConclusionBased on this grounded theory approach, postintensive care syndrome experienced by families is a complex and ongoing phenomenon that arises from the recovery trajectory of a critical illness. It involves mental, physical, social and familial aspects, particularly the impact on the patient’s family. Implications for Clinical PracticeThe findings can guide critical care nurses to understand postintensive care syndrome experienced by families in providing patient or family-centred care. To improve the long-term outcomes and quality of life for families, it is necessary to assess their unique needs within the continuum of post-intensive care syndrome experienced by the family and to propose interventions to satisfy those needs.

'Make Them Wonder How You Are Still Smiling': The Lived Experience of Coping With a Brain Tumour.

A brain tumour can be a life-threatening illness and cause unique symptoms compared to other types of cancer, such as cognitive or language deficits, or changes in personality. It is an exceptionally distressing diagnosis which can affect quality of life, even for those with a low-grade tumour or many years after the diagnosis. This study sought to gain an in-depth understanding of the lived experience of adjustment to living with a brain tumour. Twelve individuals (83% female) with a primary brain tumour (83% low-grade) took part in the study. Participants were aged 29-54years, on average 43months following the diagnosis, and were recruited through the charitable support organisations in the United Kingdom. In-depth semi-structured interviews were conducted, transcribed verbatim, and analysed using interpretative phenomenological analysis (IPA). Six inter-related themes were identified: making sense of the diagnosis, seeking empowerment, feeling appreciative, taking charge of coping, learning to accept, and negotiating a new normality. Notions of empowerment, gratitude, and acceptance throughout the illness journey were prominent in the participants' narratives. Receiving sufficient information and initiating treatment were important in negotiation of control. The results highlighted what facilitates and hinders adaptive coping. Aspects which facilitated positive coping were as follows: trust in clinician, feeling in control, feeling grateful, or accepting. Participants on a 'watch and wait' approach, while feeling appreciative, perceived the lack of treatment as difficult and frustrating. Implications for patient-clinician communication are discussed, particularly for patients on a 'watch and wait' who might need additional support in adjusting.

Diagnosis and the practices of patienthood: How diagnostic journeys shape illness experiences.

Sociologists have a rich history of studying the process of diagnosis and how people experience illness. Yet, the sociology of diagnosis and illness experience literatures have seldom been fully integrated. Instead,theseliteratureshighlight one element of the illness journey, wherein scholars either primarily study diagnostic processes and categories or people's illness experiences. Drawing on empirical studies that examine diagnosis and experiences of illness in varied settings (diagnosis during breast cancer surveillance, diagnosis and experience of autoimmune illness and incarcerated women's experiences of diagnoses and illness), in this article we build on our concept of regimes of patienthood to explain how diagnostic journeys, and the relations and power dynamics that manifest during this time, shape the illness experience and practices of patienthood. We construct a classification of diagnostic processes grounded in our empirical research that span (1) sudden diagnoses, (2) long, changing diagnostic journeys and (3) diagnostic journeys marked by disbelief and denial of care. Our findings demonstrate how diagnostic journeys and illness experiences are intertwined, with different diagnostic pathways impacting how illness is experienced. Analysing these categories collectively demonstrates that diagnostic journeys, while heterogenous, shape the practices that patients develop to manage health conditions and navigate unequal health-care encounters.

Using experience-based co-design to prioritise areas for improvement for patients recovering from critical illness

ObjectivesCritical illness recovery is a journey; from intensive care unit to hospital ward to home. However, evidence is limited on how best to enable recovery from critical illness. This study aimed to prioritise areas for improvement in care and services for patients recovering from critical illness. Research designThis study used experience-based co-design. Service users and providers worked in partnership to identify and prioritise service improvements for patients who had survived an episode of critical illness. MethodQualitative interviews were carried out with patients (n = 10) who had experienced critical illness, and staff (n = 9) who had experienced caring for patients in the intensive care unit. Key patient touchpoints were identified and used to produce a film, reflecting the critical illness journey. A patient feedback event incorporated an emotional mapping exercise, to identify key points during the recovery journey. A joint patient/family (n = 10) and staff (n = 10) event was held to view the film and identify priorities for improvements. FindingsEmotional mapping highlighted areas where services were not synchronised with patients’ needs. Four patient-focussed priorities for service improvement emerged 1. Improving the critical care experience, 2. Addressing patients’ emotional and psychological needs, 3. Positioning patients at the centre of services and 4. Building a supportive framework for recovery. ConclusionEvidence-based co-design was used successfully in this study to identify priorities for improvements for patients recovering from critical illness. This approach positions patients at the centre of service improvements and realigns care delivery around what matters most to patients. Person-centred care provision underpins all identified priorities. Implications for clinical practiceIntensive care unit staff should get to know patients and their families by talking more to patients and families about their care and engaging in more non-medical conversations. Emotional and psychological support should be provided to aid rehabilitation and recovery from critical illness in the intensive care unit, on general wards, and in the community. Information and services should be available when patients need them, rather than at fixed time points or settings. Recovery services should focus on enabling and building the self-efficacy of patients to empower them to be in control of their recovery journey.

A Tale of Childhood Loss, Conditional Acceptance and a Fear of Abandonment: A Qualitative Study Taking a Narrative Approach to Eating Disorders.

Eating disorders (EDs) are serious mental health illnesses, yet there is a need to better understand the illness experience to improve treatment outcomes. Qualitative research, and narrative approaches in particular, can elicit life stories that allow for the whole illness journey to be explored. This study aimed to explore the experiences of women with a history of an ED, identifying the life events they perceived were relevant to the onset of their ED through to recovery. Interviews were conducted with 18 women with lived experience of an ED. Through structural narrative analysis, an overarching storyline of childhood loss contributing to a belief of conditional acceptance, fear of abandonment and struggle to seek emotional support due to the fear of being a burden was identified. Negative experiences with the health sector were common. These findings have implications for the way medical professionals respond to help seeking and deliver treatment.

Motivations and experiences of patients with advanced cancer participating in Phase 1 clinical trials: A qualitative study

Background: Persons with advanced cancer may participate in Phase 1 clinical trials – first-in-human trials that are conducted with the main objectives of safety and dosing. The motivations for participation are not well understood and may include hope for cure. Aim: To explore the perspectives of persons with advanced cancer in order to understand the motivations for participating in Phase 1 clinical trials, experiences while being on trial and views on palliative care provision. Design: Qualitative study with a constructivist stance, using thematic analysis based upon the grounded theory approach. Setting/participants: 20 persons with advanced cancer who were participating in a Phase 1 clinical trial. Results: Many participants described how Phase 1 clinical trial participation was their last hope, as they were cognisant of their advanced disease. Information-seeking needs differed – some needed comprehensive information while others relied on the doctor’s recommendation. Participants experienced varied negative and positive physical and psycho-emotional concerns, and needed to draw on multiple sources of support such as family, friends and healthcare professionals. Some could list potential benefits of palliative care but felt they did not require it yet. The overarching theme was hope and positive thinking as a way of coping. Conclusions: The concepts of hope as a way of coping and the supportive presence of healthcare professionals could be weaved into a future model of palliative care to improve the illness journey for patients considering Phase 1 clinical trial participation and other persons with advanced cancer.

Family Care Coordination in the Children's Hospital: Phases and Cycles in the Pediatric Cancer Caregiving Journey

When a child is hospitalized with a serious illness, their family members must process emotional stress, quickly absorb complicated clinical information, and take on new caregiving tasks. They also have to coordinate with each other and with other family caregivers without abandoning existing work and home life responsibilities. Previous CSCW and HCI research has shown how the patient's experience changes across the illness journey, but less is known about the effect of this journey on family caregivers and their coordination work. CSCW technologies could support and augment family care coordination work across the journey, reducing stress levels and improving families' ability to stay connected and informed. In this paper, we report findings from an interview study we conducted with 14 parents of children undergoing extended hospitalization for cancer treatment. We propose the concept of caregiving coordination journeys and describe caregivers' current communication and coordination practices across different phases of the hospitalization journey, from diagnosis and early hospitalization to extended hospitalization and beyond. We characterize families' caregiving coordination routines across different time scales, and describe the current role of communication technologies in families' coordination practices. We then propose design opportunities for social computing technologies to support and augment families' communication and caregiving work during the hospitalization journey of their child.

Participating in the Illness Journey: Meanings of Being a Close Relative to an Older Person Recovering from Hip Fracture-A Phenomenological Hermeneutical Study.

When an older person suffers an acute event, such as a hip fracture, it influences the whole family. Research shows that while close relatives want to be a part of the older person's life during recovery it is associated with a high perceived level of stress and burden. To provide in-depth knowledge of close relatives' experiences in this situation, the aim of this study was to elucidate meanings of being a close relative to an older person recovering from hip fracture surgery.This study has a qualitative descriptive phenomenological hermeneutical design. Narrative interviews were conducted with ten close relatives. Analysis was conducted using phenomenological hermeneutical interpretation which provided a deeper understanding of the close relatives' lived experiences of their older person's recovery from hip fracture surgery. The structural analysis revealed two themes; "Participating in the illness journey", which was constructed of the subthemes of facing the unimaginable yet expected, encountering healthcare personnel, and noticing recovery and "Putting oneself aside", which was constructed of the subthemes of placing daily life on hold, giving support, and feeling concern and fear.

"Calling the Spirit Back:" Spiritual Needs Among Great Plains American Indians.

American Indians (AIs) are disproportionately affected by serious illness such as cancer. Colonization, cultural genocide, and trauma have adversely affected AIs' ability to attain health and well-being, and in many cases led to the loss of the right to practice traditional ceremonies and rituals. Still many AIs describe well-being as being rooted in spirituality. The purpose of this project was to learn about the perspectives of AI cancer survivors, caregivers, and Tribal leaders and healers specific to spirituality while on the cancer journey. Qualitative interviews and Indigenous talking circle methodologies were used to explore AIs cancer survivors, caregivers, and Tribal leaders and healers' perspectives on spirituality while on the cancer journey. A data analysis team consisting of AI and non-AI members analyzed the narrative data. Qualitative analysis of interviews and talking circles revealed 4 major themes related to spirituality: the chasm of colonialism, coexistence of Traditional and Christian religions, calling the Spirit back, and prayer as sacred energy. It is critical that clinicians caring for AIs with serious illness seek to understand their patients' spiritual beliefs about disease treatment and death and work with them and their families to support quality of life throughout their illness journey. In addition, clinicians must recognize the systemic racism inherent in our healthcare systems, and dismantle cultural clashes and bias for all patients, particularly AIs, who have long suffered from poorer health outcomes.